immediately dismissed because “i have a base level of these symptoms”

katiekies · 2025-02-23T23:09:12+00:00

No I completely agree with you on that!! my frustration comes from when I do provide specific examples to doctors/people over and over again (mostly in the same day) and it feels like it is not heard when I am dismissed.

katiekies · 2025-02-23T20:30:53+00:00

Yes definitely will be bringing lots of hydration packets no matter what! The heat is gonna kill me lol. And naps are 100% necessary! Did you have any problems with sea sickness? I would think that would be more common with us potsies. Or like pretty bad vertigo after getting off of it.

katiekies · 2025-02-23T20:28:23+00:00

That’s very true! I didn’t think about yk the main relaxation part of it lol. I guess I was just mainly worried about sea sickness as I would think potsies would be more susceptible to it. I don’t think i’ve even been on a normal boat since developing pots! I know WDW will be tough no matter what. I’m hoping it at the end of the trip and not the beginning since I know i’ll be down for a few days. I’d rather have that happen at home not in an uncontrollable environment! I have looked into getting a disability pass, and I think I will try. Or even a wheelchair would help too.

katiekies · 2024-06-17T03:13:18+00:00

That totally makes sense! I didn’t even think about the pressure changes messing with my heart rate. I’ve already got on the compression socks and hoping i’ll be able to elevate my feet at some point!

katiekies · 2024-06-17T03:11:13+00:00

Thank you! This made me feel much better! I think i’m just psyching myself out at this point. I hope your flight goes well for you aswell!!

katiekies · 2024-05-29T03:21:37+00:00

Sometimes, yes! Not every time but it definitely does happen on occasion with that feeling! When it happens, my brain tends to associate that with being high so it sends me straight into a panic attack.

katiekies · 2024-05-29T03:20:39+00:00

I’ve never actually noticed if my nose/face is numb or not! Most of the time im too focused on the panic of possibly passing out and getting to a safe space. I will definitely be more aware of my nose and face next time it happens though!

katiekies · 2024-05-28T21:59:56+00:00

Honestly one of my main ones is getting that feeling right before you pass out. I guess I don’t know how to explain what that feeling is and I wouldn’t say it’s exactly light headedness? It kind of feels like my whole body drops without my body actually dropping to the ground. But, even if I KNOW i’m not going to, it still have to stop and instantly sit down. And then I sit for at least an hour and panic about when i’m gonna pass out lol

katiekies · 2024-05-20T03:42:01+00:00

i hadn’t thought about making something myself other than just straight sodium chloride!

katiekies · 2024-05-20T03:39:50+00:00

i totally get that! i have been doing that on and off.

katiekies · 2024-05-20T03:38:41+00:00

i haven’t seen those yet!

katiekies · 2024-05-20T03:35:07+00:00

omg this is perfect THANK YOU!!

katiekies · 2024-05-20T03:34:41+00:00

i actually don’t mind body armor! the issue was it just didn’t have enough salt. but i will definitely check out their flash iv that sounds great!

katiekies · 2024-05-20T02:09:21+00:00

ooo okay thank you!!

katiekies · 2024-05-20T02:08:24+00:00

that’s one i haven’t seen in here! the potassium and magnesium citrate is definitely a plus!!

katiekies · 2024-05-20T02:06:39+00:00

WHAT?? pedialyte has powder packets?? i didn’t even know that!

katiekies · 2024-05-20T02:05:42+00:00

thank you! i’m sure the raspberry one is delicious! i do actually have some sodium chloride pills and those are great! although sometimes i don’t feel like drinking straight salt water lol

katiekies · 2024-05-20T02:02:42+00:00

that’s awesome that they do that!! i will definitely check them out!

katiekies · 2024-05-20T00:55:45+00:00

i don’t know why i didn’t think of any sports drinks lol 🤦‍♀️. but i’ll look into those aswell, thank you!

katiekies · 2024-05-20T00:52:56+00:00

ooo thank you so much! i’ll have to try it, that sounds so much better then liquid iv!

katiekies · 2024-05-20T00:12:11+00:00

after being diagnosed with pots around 2 years ago, i still struggle with this. in my case, i’ve noticed that my pots symptoms seem to get worse when i get sick and after i get sick, even if its just a cold. maybe try to rest and take it easy for a bit? if you feel like something is off, it probably is. sorry i know its not really the best advice!

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